Emotionally Exhausted

Hello Friends!

After today, I am emotionally exhausted I have cried all day long.  It was never going to be a particularly happy day as it is the 16th anniversary of my father's passing, and due to my now limited mobility, I was unable to go to the cathedral to light a candle for him, which I would normally have done.  I try to focus on the good and happy memories that I have of a lifetime spent with my daddy.

and here we encounter a problem. 

I'm trying to insert photographs and Google won't let me

I did however go to Shalom the local hospice for my day I attend there once a week, but I was not prepared for the news that would greet me when I arrived.

DEVASTATING

It was with a very heavy heart indeed that they told me the Hospice will be closing at the end of October. The nurse who told me was in tears herself. Shalom has been a lifeline for so many families and members of the community over the past 18 years, since it was established.  Daddy went there during the last few weeks of his illness, way back, in 2009, not long after they had opened, and my mother attended there for nearly 3 years. I have been attending there for about 18 months.  It is a caring nurturing and supporting environment for those with life limiting medical conditions. however, the bulk of the running costs have fallen on the shoulders of volunteers and fundraising activities which of course can never hope to achieve the kind of sums of money required to run such a facility.

This is the point where I have to be very careful not to get on my soapbox, but I'm already on it. So here we go. Hospices, and similar facilities should not be left to function on, or rely on community contributions and donations and the work of volunteers. They are such a valuable and vital resource within any community and therefore they should be funded by the government in full.  

So there are about four more visits for me to the hospice and that will be the end of it.  I am quite despondent over it all, having, looked forward to my Tuesdays at Shalom. I have made friends but because we are all poorly, it is highly unlikely we will be able to meet up again.  I can only hope that as we move forward something else might come along, but at the moment there is nothing. It's going to be a long and lonely winter.

I cannot say enough to express my heartfelt gratitude to the staff at Shalom and for all the fundraisers and volunteers, who have kept it going for 18 years.  We will miss you here, and you will be missed across the county. You have been wonderful to so many people, providing respite, care, advice and more.

Here is their announcement, it is a link to a Facebook page but I don't think you have to be on Facebook to be able to read it. I hope you can.

Shalom Hospice

Dance Like Elaine . . .

Hello Friends

Didn't expect Strictly to wallop me like this. In a few days it's coming up on 16 years since Daddy died. He loved ballroom dancing and won several medals for his Foxtrot and Quickstep. We used to watch SCD together for the first six series and he would always be heard saying, "call that a Foxtrot???" He never did get that it was entertainment over dancing! I've always loved dancing, first one up on the dance floor, last one off, and have enjoyed SCD dancing my way through Saturday evenings for the last 19 years from September to December. So it's making me even more sad that I can no longer do this. Bloody Parkinson's is robbing me of everything I love doing. So if you love dancing {or anything else for that matter} go out and DANCE with all your heart and soul . . . dance like no one is watching, dance like Elaine {Seinfeld} if you must, but DANCE my darlings, DANCE . . .

The Beauty of a Courgette Flower

Hello Friends!

Well, there is weather we are having!  One day it's a blistering mini heatwave and we melt, the next day the temperature nose dives and we're thinking about putting the heating on during the evening.  It poured during the night and is now a beautiful blue sky morning, but it could be another hot one, despite the stiff breezes that blow bouncily across the land.

Oh! The irony of hosepipe bans in effect across certain regions only to be finding themselves on the receiving end of torrential downpours delivering a month's worth of rain in a day.   Mind, it will take more, much more, than a week's worth of torrential rainstorms to top up some of the reservoirs, and we are told that the hosepipe bans will be in place for up to a year, or even longer.

I am very tired of late, the tweaks to my medications have not resulted in any of the hoped for changes, so I have been through the mill for the last few months in vain.  Still, it could have worked out that things could have improved.  As it happened, they didn't and I can honestly say that I have not felt well for months, not myself at all.  I miss being me.  Consequently, today I slept until midday and the I began sorting out photos on the laptop.  Here are a handful of courgette flowers I photographed using my macro lens some several years ago when I was still gardening and able to hold the camera, pre Pandemic and pre Parkinsons. 

Courgette flowers are simply beautiful to look at, as well as making a casing for delicious stuffing mixes to make a light lunch with a twist!  

My late neighbour, Maggie, and I used to have a friendly rivalry over our courgettes.  She would sow her seeds in April or May in pots in her greenhouse, potting on and nurturing the seedlings for weeks, before planting out in June, whereas I would sow mine directly in the soil in late May.   Within a few weeks, mine had germinated and grown well, caught up with hers, and come harvest time we were both starting our harvest in the same week!   I suppose the growth of Maggies plants was slowed down every time she potted them on, which was two or three times before they actually arrived in the garden, whereas mine just had to focus on growing without adjusting to root disturbance and new pots ever couple of weeks.

Do take your time with these, look at the incredibly detailed lines, the fine hairs, the subtle changes of colours in the bright yellow petals, the tiny spikes that do not deter slugs as one might expect!  These flowers are miniature works of art, and most of the time go unnoticed as they tend to bloom half hidden under the much larger leaves of the courgette plant.

Until next time,

Debbie xx

It's A Tad Bit Warm

Hello Friends!

Like most of my fellow countrymen and women, I melted last night in the 30 degree heat.  My living room, the coolest place to rest {note, not sleep} was a balmy 28C at three a.m. despite the multiple fans blowing on me. 

With Parkinson's, and other medical conditions, such conditions are doubly dangerous as we cannot regulate our body temperatures, so have to be extra vigilant during heat waves and, equally, the cold days of winter.  I have done all I can: wet flannels kept in the fridge, lots of cold, plain water, curtain chasing and window opening/closing as the heat rises outside, resting and not exerting myself, wearing loose, natural fibre clothing, and other measures to try and keep myself from overheating.  I also have to be cautious over storing my medication as the temperature goes over 25C.  Can't put it in the fridge, it's a bit like a bowl of porridge, must be just right.

I did take a couple of snaps on the phone, of some flowers in the garden, but it's too hot to stay outside for more than a couple of minutes and my tremors do me no favours holding the camera.  

I am not going to bleat on about the difficulties with the local authority and paperwork!  Finger's crossed recent lost in the post, lost in the office, and other issues are now resolved and I can move forward getting much needed help.

Instead, I shall tell you about the ragwort plant that is growing in my border.  Before anyone says to pull it up, I  have researched it online, and I do not have livestock, it does not jeopardise livestock, I will dispose of it properly at the end of the season, and finally it is a valuable source of food for about 40 species of wildlife, most notable the Cinnabar Moth caterpillar, so it's staying put!  

Until next time

Stay safe and stay cool!  Be sensible in this heat!

Debbie xx 

What a Story This Rose Could Tell . . .

Hello Friends!

Many long years ago, I grew up in the next street over in a house that had been in my family for three or more generations.  Along one hedge was a massive rambling rose that in Spring and Summer was covered in thousands of tiny pink flowers.  

I recall my mother telling me that it had been planted there by my Great Grandmother.  Even if she was wrong and it was my Grandmother, that rambler has been there for nigh on seventy years, maybe closer to eighty.

Until recently, I was able to peep over the wall of an adjacent garden and see that ancient rose still there, giving it's all.  In the last couple of years, the new owners have built a high fence, and I can no longer see where the rose blooms.  I can only hope now that it is still there.

A short while ago, I noticed a pink rambling rose flowering on a neighbour's fence. I told the neighbour how very like the rose we had in my childhood home this looked.  She then shared with me that her rose that I admired so much as it reminded me of the one from my childhood had come from the same garden. Indeed, it was a cutting from the very rose that was growing there in my childhood, that I knew and loved so well.

Much to my delight, she gave me a cutting that she had taken a few weeks earlier that was already established in a little pot. I brought it home and looked after it while it established, and the following year, I potted it into a larger terracotta pot. It didn't do too well last year, but this year it is put on some considerable growth and for the first time, has produced a single flower.

I am going to have to make an effort to try and find out if the new owners of my childhood home do indeed still have that rose on the hedge, because I think they might like to know its history.

Here are some photos the one along the wall is growing on my neighbor's wall. As I call it, the Daughter of Great Grandma's rose.  I hope mine will continue to flourish!

Do you have any inherited plants, or ones you know to be old in your garden?

Until next time

Debbie xx

All or Nothing

Hello Friends

First, for those who signed the Parkinson's petition I shared, Thank You.  Here is a transcript of the debate.  It's a start.

Parkinson's Charter Debate

It's that time of year again when ICAD takes over my desk.

I am not following the prompts.  Here's the first few days

Title Card

1/61 mixed media collage using some very pretty paper that was wrapped around some Easter eggs.  I did two slightly different versions.

2/61

Mixed media incorporating an ATC and Nuvo drops

3/61  Made using up scraps from a previous project

4/61 Mixed media incorporating an ATC. photo does not do justice to the vibrant colours or the gilding wax 

It's not easy this year and with the unpredictable nature of Parkinson's I know each card might be the last I can manage.  Then again, I could go on for months, even years, being able to do art. That's the nature of the beast.

Since I last wrote things have changed. Here's a quick update. As I told you my medication was changed. I had a consultation with the doctor on May the 6th. On May 9th he wrote to my GP. It took until may the 28th for the GP to get back to me regarding the letter. in the meantime, I had already changed my regime based on what we had discussed. The GP was way behind and having to play catch up.  Then just this last week, I've had another phone call, my Parkinson's doctor is tweaking my medication again. Is this going to take another month now before my GP catches up?

Finally, a care package has been put in place.  The agency started with me last week. I have one hours help a day. However, I am to be reassessed for more help up to three more hours a day.  

I have lost count now of how many people have been sent by the council to assess my bathroom. I am entitled to a grant for conversion, and every little, no matter how little helps.  It's just taking forever!

Suddenly, after months, even up to a couple of years, of frustration and waiting, I've got people throwing themselves at me from all directions now.  Carers, cleaners, general help and companions. It's an all or nothing situation.  My head is in a spin!

Until next time

Debbie xx

Medication Mayhem Misery

Hello Friends!

Thank you all for your kind comments on my last blog which was a bit of a Pity Party.  

While I am trying my best not to wallow, it isn't easy not to.  A sad fact compounded by the events of last Tuesday afternoon.

I had a long overdue consultation, if you can call it a consultation, via video link with the doctor who is overseeing my Parkinson's treatment and management.  I say this because his title is Doctor for the Care of the Elderly.  In other words, he looks after the over 60's and does not specllialise in any one field.  I know he was seeing my dear friend for COPD, a far cry from Parkinson's.  This in itself does not instill me with confidence.  Anyhow, I digress.  The Parkinson's nurse was also supposed to be linked in to the video call but she failed to show up.  

I had to put up with the usual diatribe that I should consider moving house, leaving the area and uproot hundreds of miles away to be nearer to better care provision than is offered in my remote area.  This would also offer me better socialising opportunities {do I want that?} with no thought for the few friends I have here, or the stress that would come with looking for somewhere else to live, buying, selling, moving and so on.  Most of us have done that, would most of us want to do it when we were already not in the best of health?  Uproot our entire world where our roots run deep in exchange for pastures new?  Giving up what few friends you have and be dropped in some strange and alien community miles from home.  No, not for me, thanks all the same.

Then came the discovery that for many, many months I have been near overdosing on a tablet that was prescribed to be taken five times a day and which should have been no more than twice a day. Heigh ho, just when you think your management can't take any more twists and turns.  I take copious notes during such consultations, and during this one the Doctor made a minimum of three changes of mind as to what I should be taking and in what combination.  This is par for the course, and I wonder if it doesn't lie behind me being given the incorrect dosage instructions.

So, effective immediately, I'm now on this new, lower dose and guess what?  My tremors are now twice as bad today as they were at the start of the week.  

No one knows who is to blame, everyone is blaming someone else, and I'm stuck in the middle.  I have already started making enquiries.  I don't want to get anyone into trouble, Lord knows the department could do without that, but my faith in the system is totally shattered now.  First things first, I have been advised to request to be copied in to the results of the investigation.  Now, I have not asked for this but have been told that when any mistake is made it must be investigated,  So, Monday morning I will be in touch with them over this.  Then, I will request a complete transcript of my medications since the beginning of my diagnosis. After that I will decide how to proceed, but right now I am stuck with a team of medical providers whom I can no longer trust to do the best they can for me.  

Watch this space!

In the meantime, there have been no applicants to my advertisement for assistance at home.  This is worrying indeed.  I need help at home desperately now.  My case worker on the Direct Payments team at the Council left and somehow my case file got misplaced.  If I hadn't phoned to follow through, I would still be missing in the cracks that seem to be everywhere.

Sometimes I feel as if I am in freefall over no man's land.  It is making an already stressful time even more difficult and more stressful. 

At least I have a gardener!  We've planted up some osteospermum Purple Sun, so hopefully they'll be providing some stunning colour soon.

Until next time
Debbie xx